Playtime

Playtime around our house tends to have a strong medical theme to it these days. I guess that's what happens when your house is transformed into a hospital. Last week I overheard Mason and Brynn playing and there was a lot of talk about suctioning, oxygen, and trach noses. I peeked around the corner to find Optimus Prime and Minnie Mouse sporting trachs of their own.

 

 

This is a scene I will never grow tired of seeing. It melts my heart how much they adore their baby sister and want to be like her.

Mason and Brynn aren't the only ones who are envious of all Ellie's cool accessories. Today Miles would not leave Ellie's pulse ox lead on her foot alone. So we pulled out an old blood pressure cuff and made a monitor for him. He was thrilled!!

 

When Ellie was in the hospital after getting her trach she got a special delivery from the Coal Team at Union Pacific. All of Scott's coworkers had sent her this darling Build-a-Bear. I don't have enough kind things to say about the Coal Team and how supportive they were through all of this, even though Scott was just a summer intern. We definitely felt a part of the U.P. family.

One of the respiratory therapists gathered up some old trach supplies for us so we could give her bear a trach to match her. I love it!! 

I'm not the only one that loved it. Mason and Brynn have been begging us to go to Build-a-Bear Workshop for months, so when Ellie got one they were green with envy. I am so proud of both of them and how well they have handled all the crazy ups and downs we have had this summer so last week I surprised them and took them to Build-a-Bear to make their own bear as a back to school gift. The cutest part was when we got home they both wanted their Bears to have trachs like Ellie's bear. Thankfully the respiratory therapist had included a couple extra trachs and Ellie was happy to donate the rest of the supplies. I love the finished product!!

Mason with his Black Bear "Minedee" (pronounced Mine-Dee) I have no idea where the name came from.

Brynn with her colorful bear "Cinderella". She's not quite as original as Mason.

For the record I wanted to get Miles a bear, too, but Scott insisted he is too little to care and we have plenty of bears around the house he can have for free. I see his point, but I still feel bad he is the only one without a special bear. One day when he's a little older I'll take him back and let him pick out a bear, too.

Good Old Utah Summer

When we realized there was no way the kids and I were going to make it out to Omaha this summer I was devastated. This just added to the ever growing list of plans we make that never seem to work out. The only consolation was watching Mason, Brynn, and Miles enjoy a good old Utah summer that was extremely reminiscent of my childhood summers. Get ready for some serious overload, because I'm about to cram their entire summer into one post.

• Miles became best buddies with Grandpa Val. They would start their day bright and early together with Miles watching my dad shave (I did the same thing as a little girl) and they would spend the evenings playing "Grandpa Fetch" a game Miles created where he stands in the back of Grandpa's truck and throws balls out for my dad to chase. 
  
• Mason and Brynn spent every spare moment riding their bikes and scooters around the neighborhood with their friends.
  
• Brynn became a whiz on the Strider bike and then took off riding a two wheeler without an ounce of help.
  
• Miles visited the neighbor's chickens countless times a day.
  
• My mom made sure the big kids had plenty to keep them busy and entertained throughout the summer. Tennis lessons, golf lessons, and swim lessons to name a few.

  

  Kennedy, Cannon, Mason, and Brynn at Golf Lessons.

  
  
  
  
  
  
  
  
  
  
  
  
• Countless trips to the swimming pool. Riverside and Aunt Marilyn's were their favorite pools this year. Puddlejumper floaties for Brynn and Miles were the best investment we ever made. Brynn is finally completely comfortable in the water and a little fishy who loved jumping off the diving board and diving for toys on the steps. Miles doesn't have an ounce of hesitation in the water and jumps off the diving board whether anyone is watching or not and miraculously made it through the summer without drowning. Mason is a pro swimmer who has moved on to doing tricks off the diving board and hand stands in the shallow end.
  
  
  
  
  
  
  
• On the days they didn't make it to the pool the hottub was an acceptable substitute.
  
• Brynn was thrilled to be living just a few houses away from her best friend Emmett. She would drive the black truck over to his house to pick him up and they would cruise around together like they were 16 years old.
  
• My dad would tell his famous Snowflake bedtime stories to Mason and Brynn every night. Every story is about how he, Evan, and Ivan (his real childhood best friends in Snowflake, Arizona) saved Snowflake from whatever giant creature Mason and Brynn chose that night. I have so many great memories from my childhood sharing these same stories. Soon Mason and Brynn did a great job telling their own "saving Orem" stories.
• Miles ate watermelon with Grandpa Val every morning and every night.
  
• My parents took the kiddos to the Allred Family Reunion at Bear Lake while we were in the hospital with Ellie. Kids got to experience jet skis and a "motorboat", as they both refer to it , for the first time. I think their favorite part was just playing with all of their cousins (including 2nd cousins). I stole these collages off Whitney's blog since I wasn't there.
  
  
  
  
  
• Living with Grandpa Val means a lot of swag from every Chamber of Commerce and Utah County business event. Mason was in hoarder's heaven!!
  
• We were able to sneak in a trip to the zoo for their lego exibit while Ellie was in the hospital. This was Miles' first trip to the zoo since he's been old enough to appreciate it and we had so much fun watching him get excited about each and every animal. I think the rooster walking around was his favorite of all the animals.
  
  
  
  
• Mason was introduced to the world of night games and was a big fan!!
• The boys got their annual summer buzz. Miles wasn't so sure about the buzzers and took off after one pass. Grandma is a lot nicer than Mom and Dad and didn't want to hold him down crying, but the damage had been done and there was no other option. The sucker at the end was well worth it.
  
  
  
  
  
  
  

That is just a glimpse of all the fun these kiddos had living at Grandma and Grandpa's house.
How do I even begin to thank my parents for all they have done for us this summer? My mom put her life completely on hold and became a full-time mother to my children. She split the long night shifts taking care of Ellie with me. My dad started off his summer by turning around on his way down to St. George for a golf weekend when he heard we were having our baby and has since golfed less than I have ever witnessed because he would come straight home from work each night to help with the kids. They gave my older kids stability and a sense of normalcy that I couldn't provide. They had to fight their grandparent instinct to spoil and instead provide consistency and discipline. I have worked hard my entire life to be self sufficient and so as much as I would like to be able to say I could have done it on my own the truth is I couldn't have. There is no way I could have given my kids the wonderful summer full of positive memories that they had. In fact, I honestly don't think I could have even survived this summer without them.  Thank you Mom and Dad! 

Nothing but a Rainy Day

To anyone else, it might have appeared to be like any other Saturday, but to us it was so much more. It was the first day our family of six had been under the same roof from sun up to sun down without any help from family or friends since the day Ellie was born. It felt wonderful. It felt right. The best part of the day was when an afternoon thunderstorm rolled in. The kids were anxious to get some use out of the umbrellas they got for their birthdays.

But then the rain really started coming down. I dare say it was the hardest I had ever seen it rain and after just 15 minutes our street turned into a running river. (Scott informed me this storm was nothing compared to Omaha storms.)

The rain let up and so we quickly fashioned some garbage sack ponchos and headed out to play

We made a game of filling buckets and watering our dead lawn.

 

An hour later the streets were dry again and it was as if the storm had never happened. 

I am so grateful Ellie happened to be sleeping soundly in her crib during this little window of time so I could be spontaneous and make some memories with my big kids. It felt so normal. It felt like a glimmer of hope that life will go on. 

Just like this storm the last little bit of our life has been the most intense downpour of trials I have ever experienced. But it feels like the storm is letting up. We are still wadding through the giant puddles left behind but are starting to enjoy little moments along the way. I keep telling myself that just like the street, one day, many years from now, the water will all be gone and there will be little evidence of this storm we have endured. It will just be a memory. But like the grass, we will benefit from the extra water and hopefully be a little greener.

Trisomy 4p

I've shared a lot of details about Ellie's life here on this blog, but there is one part of her story I have kept to myself. The part of her story that hurts so bad I don't want to talk about it. You may recall my very first post of Ellie's Story when I mentioned the concern about possible genetic abnormalities. Well, I may have downplayed that a bit. Ever since Ellie was born there have been a lot of little things about her that don't quite add up. When the pediatrician was assessing her after she was born he asked us if she looked like our other kids, not because he was curious whose features she had, but because he felt she didn't look quite right. Some of the things that were concerning were her thick and flat upper lip, low set ears, high arched palate, short and thick neck, abnormal creases on hands, underdeveloped pinkies that stop at the second knuckle one with a partial nail and the other with no nail, low birth weight and difficulty gaining weight, along with all of the eating and breathing problems that have been persistent throughout her life. Yesterday we met with the geneticist to follow up on some genetic testing that was done during her last admission. The tests showed she has a rare chromosomal disorder called Trisomy 4p. Basically she has a complete extra "short arm" of her 4th chromosome that is attached to one of her 15th chromosomes. There are only about 100 documented cases in medical literature, so rare is an understatement. Because it is so rare and every case is so individual, we don't know exactly what Ellie's development will be like, but we do know that she will have severe delays in her motor and cognitive development. We just hope to provide her with every opportunity we can to reach her full potential, whatever that may be.
If you would like to know more about Trisomy 4p you can check out this or this article. That is pretty much all we know, so once you have read those you know as much as we do!

Just Ellie

Are you tired of seeing pictures of Ellie surrounded by blue corrigated tubing and footprint hospital blankets? 'Cause I am. So here are some pictures of just our darling Ellie Bellie.

 Always has those fingers in her mouth these days.

 Ellie's super sad face.

Still up in the hospital requiring extra oxygen, but slowly getting better. Hope to be home in a day or two.

Hospital Memories

When my other kids were babies I made a list of things I wanted to remember about them in their first couple months of life. Since Ellie has spent 1/3 of her life (33 days in 3 months) in the hospital, I guess I am doing the same thing by making a list of hospital memories.

• Every single doctor, nurse, and respiratory therapist that worked with her would comment on her head full of auburn hair and insanely long eyelashes.
• When she was intubated she would suck on her breathing tube like a binky and you could hear the smacking all the way out in the hall.
• She continues to love her big green binky.
• Fell in love with the animal mobile that hung above her crib. She would cry whenever the music stopped so we just kept pushing the button over and over.
• She has quite the little temper and holds her breath when she gets really mad.
• I lost track of how many IVs she had somewhere around 10. She was a very hard stick and always required a couple attempts before they got one in. Not fun.
• The Anesthesiologists all disliked her...she never did well under anesthesia and kept them nervous and on their toes.
• Her busy little hands loved to grab onto any tube or wire, which there was never any shortage of.
• She found her fingers and thumb and has been sucking on them ever since.
• Continues to have her days and nights mixed up. She thinks 2 am is a perfect bedtime. Why not, when she can just sleep until noon the next day? 
• She does not like a messy diaper and will let you know about it in a hurry.
• Has the happiest smile and the saddest little frown you have ever seen.
• She can't vocalize at all with her trach (even her cry is silent), but occasionally she makes a quacking noise like a duck when she is able to force a little air around her trach. Scott calls her his little ducky.
• She does not like having her trach care done, but I can't blame her for that.
• Everyone who cared for Ellie commented on what a little fighter she is and how well she has done with everything she has been through.
• Ellie loves the pink swabs we do oral care with. She acts like it's a lollipop in her mouth.
• Due to a big leak around her trach the ventilator literally alarmed non-stop during the time she was hooked up to it. Scott would sit by her bed and sing along with the ventilator alarms.

Ellie's last surgery to do the Nissen and place a g-tube went well. Once again the anesthesiologist had a hard time ventilating her and it took an hour and a half of combined efforts by him, the ENT, and general surgeon to get her airway stabilized in a way that would allow adequate ventilation. Once they got that under control they were able to proceed with the rest of the surgery. When the surgeon talked to us after he said Ellie is the littlest package that is full of surprises. While doing the Nissen they found a hole in her diaphragm that was allowing her stomach to travel up into her chest cavity. The doctor called it a paraesophageal hernia and said this type of hernia is extremely rare in babies.

This was yet another thing that was stacked against Ellie's eating and breathing. They repaired the hernia and did the Nissen. Her stomach was so small it took almost the entire thing to wrap it around her esophagos. There was just enough left to put the g-tube in, but she will have to be on continuous tube feeds for a while until her stomach can stretch out and tolerate bolus feeds better. The best part about this surgery was Ellie came back from surgery with nothing on her face. Other than her newborn pictures she has never had a face free of tubes and tape.

Ellie was able to come home without requiring any oxygen during the day. She wears an "artificial nose" on the end of her trach that helps filter and humidify the air she breathes. We have a trach mask that we have to hook her up to at night and when she's napping that provides humidified air and we can run a little bit of oxygen through it as well if she needs it.  While on her trach nose Ellie is much more portable than she was on oxygen. Her continuous tube feeds are the only thing she is hooked up to and they go in a little backpack I can put on and move about the house freely with her. Leaving the house is a different story. Ellie is not a light traveler. There are several things we must always have with us when out and about with Ellie. Those things include her "trach bag" that has all the emergency supplies we could need with her trach, an emergency g-tube kit that thankfully fits in her trach bag, her feeding pump backpack, portable suction, and portable oxygen (even though she's not on it regularly we have to always have it with us in case of an emergency). With all of that it is sometimes easy to forget that she is still a regular baby that requires a typical diaper bag with diapers, wipes, a change of clothes, binkies, blankets, and extra milk.

Right now the only place we have ventured out with her is to my mom's house and the doctor. I don't think fun outtings are going to fit into our new life quite like they did in our old one.

We finally made it in to our regular pediatrician for her hospital follow up and 2 month check (everytime we scheduled one we missed it because she was back in the hospital).  At almost 3 months old she weighes a whopping 8 pounds 7 ounces and is 20.75 inches long. She is not even on the growth curve with either one of these. One of my friends came to see Ellie after we got home and said all the pictures in the hospital made her look like she was starting to get some chub, but in real life she still looks like a newborn. Her face is definitely filling out and she has some nice rolls on her inner thighs around her diaper. But other than that she is still pretty tiny.

I have slowly been working on this post since we got home from the hospital, but wouldn't you know it took us being back in the hospital for me to finish it.

Deja vu

Back when Ellie was born and all of this started I debated creating a new blog to post updates on to keep family and friends informed on how Ellie was doing. At the time I was hoping it was only going to be a month or two of Ellie on oxygen and getting her weight gain on track and there wouldn't be enough to update on to dedicate an entire blog to, so I instead decided to post the updates here on our family blog and temporarily open it up to the public. As it turns out I probably should have started the blog, and who knows, maybe I still will. But as for now here I am posting the same old story yet again.

Ellie has had a pretty good week at home and I was finally starting to feel like maybe we could do this after all. Then yesterday afternoon something changed. Ellie was coughing and gagging a lot and when we suctioned we weren't getting much out. We were afraid her secretions were drying out and tried to get as much humidification through her trach mask as possible. But as the night went on Ellie's breathing was becoming more and more labored, her sats were dropping, and she started having that eerily familiar dusky look about her. At 1 am she was making me too nervous so we called my mom to come and stay with the kids (it was only our second night with all the kids home) and Scott and I took Ellie to the hospital. She was really struggling to breathe and we didn't feel comfortable driving all the way up to Primary's so we took her to Timpanogas Hospital. From the minute we walked through the ER door you could tell the doctors, nurses, and therapists were all out of their comfort zone with a infant trach and wanted to get her out of there as soon as possible. They were able to stabilize her enough using CPAP for lifeflight to transport her up to Primary's. 

*Side note: It is Mason life long dream to fly on a lifeflight helicopter and when he found out about it the next morning his response was, "Ellie is sooo lucky!!" I'm sure she'd trade placed with you in a heartbeat bud.

  

Ellie tested positive for rhinovirus, a fancy name for the common cold. They think that the change in type and amount of her secretions mixed with some drying out was just a little too much for her. So she is once again here in the PICU requiring CPAP which gives her some extra oxygen and positive pressure to help decrease her work of breathing (she has not been requiring any oxygen during the day at home). So they'll keep her here and continue to give her the extra support she needs until she gets through the sickness. Who knew a cold could cause so many problems. I'm not excited to see what happens come RSV season?